Self-medicating cancer patients are setting up an online database so they can share information about what happens when they take an unapproved drug that successfully shrank tumours in lab rats.

By CanWest News ServiceMarch 18, 2007

EDMONTON - Self-medicating cancer patients are setting up an online database so they can share information about what happens when they take an unapproved drug that successfully shrank tumours in lab rats.

But experts warn such a database will be riddled with problems.

Interest in the dichloroacetate (DCA) has skyrocketed since January, when the prominent academic journal Cancer Cell published a University of Alberta doctor's findings that the compound -used only in lab animals - shrinks tumours without damaging healthy cells.

The drug has been around for decades but has not been approved by either Health Canada or the Food and Drug Administration in the United States. It is only being tested for human use in clinical trials.

But that has not stopped terminally ill cancer patients and their loved ones from trying to buy the inexpensive, water-soluble powder from chemical suppliers. Many are giving each other advice about using DCA over the Internet, including on a discussion board at www.thedcasite.com, where talk has turned toward establishing a patient database.

"This way, we may be able to make a contribution to the welfare of others and seek true understanding on whether this drug DCA works," wrote one person who says he is a 46-year-old man working in the medical field and taking the drug for prostate cancer that has spread to other parts of his body.

"If done analytically with no predetermined agenda, I think this board could become a powerful research tool."

The writer suggests all new DCA users who participate in the online database should fill out a medical intake form consistent with those used in standardized studies. The volunteers should then regularly submit follow-up information noting any adverse effects, blood-test results, dosage information and more.

Associate professor of health ethics at the U of A's John Dossetor Health Ethics Centre Laura Shanner questioned the usefulness of such an undertaking, where data would be compiled and reviewed by people without any training.

"If it starts going badly, who is following you before it gets out of control? By the time you realize your liver is failing, you're in big trouble," Shanner said.

"We all hope this drug will be the breakthrough. I sure understand the desire of someone who is seriously ill or whose loved one is seriously ill (to find a treatment), but there is the risk that you could poison someone on top of their having cancer."

DCA has been known to cause peripheral neuropathy in humans - reversible damage to peripheral nerves that causes imbalance and finger numbness - as well as low sperm counts in animal tests.

Many cancer patients would likely be ingesting chemical-grade rather than pharmaceutical-grade DCA, warned cardiologist Dr. Ruth Collins-Nakai, past president of the Canadian Medical Association and chief medical officer with CardioMetabolics Inc., a U of A spinoff company that is running a DCA study on geriatric open-heart-surgery patients.

"They might be taking contaminated something-or-other, and the contamination may be the thing that's causing the side effects," said Collins-Nakai.

"You have to meet stability, purity and temperature standards (to manufacture pharmaceutical-grade drugs). You have to meet concentration standards, efficacy standards. There's a whole series of things you have to do to make sure it's safe to be put into the human body."

The president of CardioMetabolics Inc. - a small Edmonton company aiming to get Health Canada approval to use the drug on heart patients - said he thinks the company might be able to help Dr. Evangelos Michelakis get DCA on the market more quickly. That's because the company is well-positioned to bring the drug to market, said Kimmo Lucas.

"That's our goal. That's what we do."

CardioMetabolics already has two U.S. patents on the use of the drug for heart patients. The drug itself cannot be patented, but method patents are available on how the drug is administered, said Lucas.

CardioMetabolics is about to begin a Phase 3 study of DCA on 80 geriatric heart-surgery patients. There are fewer health concerns about using DCA to minimize heart damage because the drug is given only for a 24-hour period, Lucas explained. Past studies on children showed heart patients who received DCA were released from intensive care two and a half days earlier than those who did not get the drug.

Michelakis has said he hopes to start Phase 1 clinical trials on cancer patients within the next two months. It will likely be years before DCA could be widely used to treat cancer, he said.

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